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[stressedout]

Hi My 14 yo daughter has had a history of tics and OCD and intrusive thoughts for most of her life but didn't cause a lot of problems.  She used to be social and had friends, was never violent and was mostly typical. During covid her issues have really become very bad.  She was tested for strep and mono back in May but they were negative.  Over summer she has changed tremendously.  She has severe behavioural issues now.  She started to become extremely aggressive with me to point of beating me up when I try to get her off the screens.  She is obsessed with drawing and using her computer for mindless things.  She has cognitive decline.  She is completely disorganzied.  She acts autistic now with very few social skills.  She can barely get dressed or up and she is very difficult to communicate with.  She can't concentrate on anything anymore and can not be reasoned with.  She refuses to do her homework/  But most of all she is very violent when you try to interrupt her from her obsessions.  She is easily confused.  Does any of this sound like Pandas/Pans. I dont know if this is autism that cropped up as a teen which doesn't really make sense because it is so extreme, or schizophrenia or what.  I am really worried because this has been bad for at least 6 months and it just keeps getting worse.  

[PandaEverdeen]

On 10/26/2021 at 2:27 PM, stressedout said:

Hi My 14 yo daughter has had a history of tics and OCD and intrusive thoughts for most of her life but didn't cause a lot of problems.  She used to be social and had friends, was never violent and was mostly typical. During covid her issues have really become very bad.  She was tested for strep and mono back in May but they were negative.  Over summer she has changed tremendously.  She has severe behavioural issues now.  She started to become extremely aggressive with me to point of beating me up when I try to get her off the screens.  She is obsessed with drawing and using her computer for mindless things.  She has cognitive decline.  She is completely disorganzied.  She acts autistic now with very few social skills.  She can barely get dressed or up and she is very difficult to communicate with.  She can't concentrate on anything anymore and can not be reasoned with.  She refuses to do her homework/  But most of all she is very violent when you try to interrupt her from her obsessions.  She is easily confused.  Does any of this sound like Pandas/Pans. I dont know if this is autism that cropped up as a teen which doesn't really make sense because it is so extreme, or schizophrenia or what.  I am really worried because this has been bad for at least 6 months and it just keeps getting worse.  

The short answer is yes, this sounds exactly like PANS/PANDAS. There is a great deal of anecdotal evidence of kids with this disorder that had issues before, but had a period in their life where the symptoms just blew up. (I was personally one of those kids.) I wouldn't rule it out based on the negative strep test. Here's a really good explanation from PANDAS Network about diagnosing PANS/PANDAS, and how negative strep tests don't necessarily mean the absence of strep. https://pandasnetwork.org/understanding-pandas/diagnosis/ 

I have Asperger's, and can tell you that while the signs of it became stronger later in my childhood (8-9 years old), this does not sound like Asperger's/autism spectrum disorders. While some of the symptoms become more apparent in the teenage years, I've never heard of them being abrupt-onset or becoming more apparent this drastically, as you said.

I would suggest you seek out someone who treats PANS/PANDAS/basal ganglia encephalitis. They can run tests that would have a better chance of finding infections-PANS kids are notorious for not showing "normal" signs of infection, e.g. a sore throat for strep infections. There's also the gold standard test for PANS/PANDAS kids, the Cunningham Panel, that could be run.

[APandasMom]

Hello, I know it's been awhile since your post but if your like me you are still scouring for anything that helps. I been there and it was the scariest time of my life. My son was 4 when he first had mild pandas (test confirmed titers high from strep) that was treated for years with azith successfully from integrated med pediatrician. He was 8 went it came back full force. Tics, OCD, AGGRESSION, anxiety. And it was as bad as you mention, sometimes worse. 

I am not a Dr but I will share with you what we did. First our Dr got us back on azith and referred us to an immunologist. This has been a long expensive trip that we are still on. As for what we could do at home:

1. He could not attend school. We ended up having to homeschool.

2. We had to eliminate anything that raised his dopamine. Too much Dopa we found was causing the rages/tics. Special diet...no artificial colors, no artificial flavoring, no enriched products (esp. folic acid , copper, choline nd B12 that affects his OCD.) I know I say no but later on we could have 1% but there is always tic flairs. The rest of the elimination gives a little room. We also found from Dr that he was lactose intolerant so any food sensitivities should be addressed as well. And no yogurt bc of added probiotics.

3. Supplements there is a lot of crazy stuff out there so proceed with caution. There's a lot of stuff both supps and prescrip that didn't work. Here's what we use that helps us. Natural vitality calm-ionic magnesium citrate. There are several options. We are currently on the gummies but at first I put unflavored powder in lemonade or anything. This helps with tics and anxiety for us. Next big help is motrin we use kids liquid dye free equate brand if avail. This brings down inflammation. We also use Homeolab USA- Kids Relief Syrup With Calming Effect - Grape Flavor. I am not big on homepath but I tried a lot and this seems to help. I think it's the valerian but I don't know for sure.  And myo-inositol (not inositol) powder for ocd. Protocol for lLfe - pure - no additives.

These are out staples,  twice a day.  With chewable iron once daily bc levels are low. When things are real bad we get refill of azith from Dr. We went through lots before we found one that didn't raise his Dopa. We make sure when using antibiotics to supp with probiotics Culturelle Kids Probiotic - packet with Lactobacillus GG only. Some probiotics have neg affects.  Everyone is different.

And lastly, when things are really really bad a quick thing to help lower Dopa is kava kava tea. (Not kava) we use yogi. We don't overuse bc it can bring levels too low. But it helps us. Yogi brand is good.

It seems like for us it's a balancing act. Tics rage anxiety high when Dopa high, OCD high when Dopa low. So just trying to keep even keel as we go through numerous costly not ins covered treatments. I have no idea how anyone else does this.

We consulted our Dr for all these, please do the same if you think any will help some have side effects. Here's my orig link as to why some of the supps listed I know it's for traditional ocd but it seems to help us some out of everything out there: http://www.alternativementalhealth.com/natural-healing-of-obsessive-compulsive-disorder-ocd/

For us it has been better by not limiting screen time. I found that it just seems to help to focus on something. Just have to watch the natural Dopa that could occur from it. Also being able to show rational online to support things I ask him to do. 

Things here are ever changing but they are so much better than they were years ago. ( I think puberty kicking in is helping too. ) We can have some sense of normalcy. But it's been a long winding road of patience understanding and support. We burned a lot of bridges and threw a lot of norms by the wayside.  Just remember that bright loving kid is still in there and what they are doing is not really them. (And that they really don't mean it when they say horrible things.)

Our son is 15 now and in high school doing well. Still in treatment, but 80% better.

It WILL get better. (Believe me I had doubts-lots.) Wishing you peace. 

 

[dr_steve11]

On 1/8/2022 at 8:38 AM, APandasMom said:

Hello, I know it's been awhile since your post but if your like me you are still scouring for anything that helps. I been there and it was the scariest time of my life. My son was 4 when he first had mild pandas (test confirmed titers high from strep) that was treated for years with azith successfully from integrated med pediatrician. He was 8 went it came back full force. Tics, OCD, AGGRESSION, anxiety. And it was as bad as you mention, sometimes worse. 

I am not a Dr but I will share with you what we did. First our Dr got us back on azith and referred us to an immunologist. This has been a long expensive trip that we are still on. As for what we could do at home:

1. He could not attend school. We ended up having to homeschool.

2. We had to eliminate anything that raised his dopamine. Too much Dopa we found was causing the rages/tics. Special diet...no artificial colors, no artificial flavoring, no enriched products (esp. folic acid , copper, choline nd B12 that affects his OCD.) I know I say no but later on we could have 1% but there is always tic flairs. The rest of the elimination gives a little room. We also found from Dr that he was lactose intolerant so any food sensitivities should be addressed as well. And no yogurt bc of added probiotics.

3. Supplements there is a lot of crazy stuff out there so proceed with caution. There's a lot of stuff both supps and prescrip that didn't work. Here's what we use that helps us. Natural vitality calm-ionic magnesium citrate. There are several options. We are currently on the gummies but at first I put unflavored powder in lemonade or anything. This helps with tics and anxiety for us. Next big help is motrin we use kids liquid dye free equate brand if avail. This brings down inflammation. We also use Homeolab USA- Kids Relief Syrup With Calming Effect - Grape Flavor. I am not big on homepath but I tried a lot and this seems to help. I think it's the valerian but I don't know for sure.  And myo-inositol (not inositol) powder for ocd. Protocol for lLfe - pure - no additives.

These are out staples,  twice a day.  With chewable iron once daily bc levels are low. When things are real bad we get refill of azith from Dr. We went through lots before we found one that didn't raise his Dopa. We make sure when using antibiotics to supp with probiotics Culturelle Kids Probiotic - packet with Lactobacillus GG only. Some probiotics have neg affects.  Everyone is different.

And lastly, when things are really really bad a quick thing to help lower Dopa is kava kava tea. (Not kava) we use yogi. We don't overuse bc it can bring levels too low. But it helps us. Yogi brand is good.

It seems like for us it's a balancing act. Tics rage anxiety high when Dopa high, OCD high when Dopa low. So just trying to keep even keel as we go through numerous costly not ins covered treatments. I have no idea how anyone else does this.

We consulted our Dr for all these, please do the same if you think any will help some have side effects. Here's my orig link as to why some of the supps listed I know it's for traditional ocd but it seems to help us some out of everything out there: http://www.alternativementalhealth.com/natural-healing-of-obsessive-compulsive-disorder-ocd/

For us it has been better by not limiting screen time. I found that it just seems to help to focus on something. Just have to watch the natural Dopa that could occur from it. Also being able to show rational online to support things I ask him to do. 

Things here are ever changing but they are so much better than they were years ago. ( I think puberty kicking in is helping too. ) We can have some sense of normalcy. But it's been a long winding road of patience understanding and support. We burned a lot of bridges and threw a lot of norms by the wayside.  Just remember that bright loving kid is still in there and what they are doing is not really them. (And that they really don't mean it when they say horrible things.)

Our son is 15 now and in high school doing well. Still in treatment, but 80% better.

It WILL get better. (Believe me I had doubts-lots.) Wishing you peace. Enjoy your childrens with the products of ranboo merch official.

 

Totally incredible posting! Loads of valuable data and motivation, Author sharing such a wonderful article with us.Thanks for posting.

Edited November 26, 2022 by dr_steve11